Last night I was on my knees at Kirra's bedside praying over her while she fell asleep. There is something so amazingly peaceful about watching your child sleep and praying over them. As I prayed for her and Jaret, I counted my blessings for my beautiful children. For the joy that they bring me and for who God is creating them to be. I am so blessed for the part I am privileged to play in that. I poured out my gratitude for the grace and discernment he gives me for this special role. The role of, "Mama" as Kirra calls me most recently. I also praised Him for the health of my children. And my thoughts and prayers turned to Hope...
Hope is a Grade 4 student at Bearspaw Christian School. She went in last week for a tonsillectomy. She was sent home and then a couple of days later, when her mom went to wake her, she was unresponsive and had gone into cardiac arrest. An ambulance was called and CPR performed. Later that day, Hope's parents were told to say goodbye and prepare for the worst as their daughter needed to be placed on bypass machines for her heart and lungs (one of which had collapsed). Miraculously, Hope pulled through. At some point she was transferred to Edmonton Stollery and is now back in Calgary at Children's. She has been in a drug-induced coma as well and doctors have run an EEG and MRI to determine the extent of the brain damage. It has been a difficult journey for this family in a short week that probably feels anything but short. The doctors are uncertain as to what has happened. I am on my knees praying, will you join me and the countless others who are also praying? A facebook page has been set up that has regular updates. Below is the link to the facebook page and some specific prayer requests.
http://www.facebook.com/events/310526742303915/
- Pray that her seizures will stop
- Pray for complete healing of her brain
- Pray for the continued healing of her lungs
- Pray that she would be able to come off all the medications she's been put on
- Pray that we would feel Gods' peace
- Pray for wisdom for the doctors that they might discover the cause of Hope's condition
-Pray for God's will to shine through in this situation and that God will be praised
Detailed Diary of Hope's Journey:
Thursday, December 8th
Heather took Hope in for a routine eye exam and after the doctor dilated her eyes, he noticed the veins in the back of her eye appeared to be swollen. The doctor thought it was nothing and could just be the way he viewed her eyes but just to be sure, he ordered a dye test, which confirmed dilated veins in the back of her eye, which in turn can be a sign of swelling in the brain. He followed it up by ordering blood work and a urine test.
Friday, December 9th
The doctor’s office called and said that they needed to get Hope in right away for another urine test because the results had come back and her white blood cell count was high.
Monday, December 12th
Hope had been previously scheduled to have her tonsils removed and went to the hospital Monday morning not knowing whether the surgery would be performed or not due to recent health concerns. The doctor decided to go ahead with the surgery anyways because her tonsils were causing some breathing and other problems. The surgery went well and Hope did great and they went home to heal.
Tuesday, December 13th
Hope continued to heal at home from her surgery. Although not liking the pain involved in keeping herself hydrated and the tonsil site moist, she was doing well and taking codeine for the pain.
Wednesday, December 14th
Heather was up several times with Hope through the night and finally left her sleeping at around 6:30 am. Heather later woke up and heard a sound like coffee percolating at around 9:15 am. She went to investigate and found it to be coming from Hope. Hope was unconscious, her lips were blue but she had a pulse. Trevor immediately called 911. By the time the ambulance got there, Hope’s pulse was quite faint. They got her in the ambulance but were delayed before finally being routed to the hospital, which was about a 10 minute drive. Hope went into cardiac arrest in the ambulance on the way to the hospital and they performed CPR, which had to continue once at the hospital as well. Her cardiac arrest lasted around 10 minutes. They tried to stabilize her but did not have success and the only hope to save her was a brand new type of life support machine which had only been in the hospital for one and a half months and the only training had happened one month prior to that day. The surgery to get her connected to this life support machine was very dangerous, requiring the hospital staff to put a tube the size of an adult’s thumb through her jugular vein and carotid artery straight to her heart. The surgery went well and they finally got her stabilized. The life support machine was set at 100% meaning it was doing 100% of the work for her lungs and heart. Though there was significant risk in transferring her, the doctors decided to transfer her to Edmonton to the U of A Hospital/Children’s Stollery Hospital where Hope could be put under the care of the leading experts in regards to the new life support machine. This was critical due to her current condition. Once the decision to transfer her was made it still took a long time to transfer her, partially due to flight and ambulance timing but mostly due to the massive number of machines they had to bring, switch her over to and then load back on to the plane again.
Thursday, December 15th
The transfer went smoothly and because she was stabilized, they turned the life support machine down to 85 and Hope was doing well. The doctors turned the Life Support machine down to 20 to see if her heart could cope. Hope’s heart was unable to sustain her, so the machine way turned it back up to 85 at which point she re- stabilized. Later, they turned the machine down to 70 in the afternoon, her heart functioned well but her Blood Pressure started to rise too high. They turned the machine back up to 75 and she seemed to be doing well there. Hope’s heart was working better but they didn’t want it to work too hard so they put her on a drug to dilate her veins so her heart didn’t have to pump as hard. Their goal was to get her stabilized at 50% for the night.
Hope’s lungs contained fluid and the doctors were unable to drain them. This meant that her lungs being unable to support her oxygen needs, leaving her still very dependent on the machine.
They turned the machine down to 50% later that evening and Hope stabilized and was doing well. The doctors plan was to keep her stabilized overnight and resume lowering it the following morning.
Trevor met with a doctor and although the machine was down to 50 the doctor had serious concerns about Hope's brain activity.
Friday December 16th
Hope tried lifting her arms and legs. She was moving enough that the doctors restrained her out of a fear that she might accidently remove one of the tubes. There were many hurdles to get over today, if things went well they were going to try removing her from the heart and lung bypass machine which would then be followed by surgery to remove the tubes from the cardiac veins in her neck.
Hope went into surgery with the intent of removing the life support machine. Her heart and lungs were a point where they doctors felt confident she was ready. Surgery took approximately 2 hours, then there was a waiting period to see how Hope’s body was responding. Hope continued to be on a ventilator at this stage, because her lungs were still unable to support her. Surgery recovery was expected to take from 1 to 3 days. There were some positive signs and with her movement and overall response. They didn’t know yet if Hope had suffered brain damage.
During Hope’s surgery everything went well, she's was off the life support machine and her heart was functioning very well. She remained on the ventilator but her lungs were also showing improvement. The next step would be to assess her brain activity. That was expected to take quite some time.
Hope continued to show positive signs even though she was still heavily sedated.
A chest X-ray came back and showed that the top portion of Hope’s right lung had collapsed in a few areas.
Saturday December 17th
Hope showed some small but significant signs of response today, trying to open her eyes, lifting her arms, squeezing her parent’s hand, wiggling her toes and even moving her head in a yes and no direction when asked about pain and where. This was awesome and showed good promise for intact brain function. More good news came for her lungs, which were showing improvement as well. She was still on the ventilator and struggling to try to clear large amounts of fluid in her lungs. She was not expected to come off the ventilator for at least a couple more days. Hope’s sedation medications were cut back but that meant increasing her pain medications a bit as it's stressful on her being aware of the tubes in her mouth and throat as well as obvious pain from all she's been through these past few days.
Throughout the day, Hope continued to make small improvements in lung function. Her brain also saw response to different stimulus. The doctors expected her condition to stay about the same for the remainder of the day and tentatively set Sunday as the date for Hope to be transported back to Calgary. The plan was that she would continue on the ventilator until after she was transported back to Calgary to minimize the risk during the trip. In the mean time, medical staff continued to suction her lungs.
The newest chest x-ray has come in and the collapsed portions of her lung have inflated.
Sunday December 18th
Up until now, Hope has been provided any nutrition through an intravenous (IV) needle, but today medical staff successful installed a feeding tube into her large intestine.
Hope was doing well and was trying to wake up, so medical staff put her back on a sedative because they don’t want her to wake up until she’s off the ventilator.
The plan remains that Hope will be returned to Calgary today on the ventilator. If they decide not to move her until late tonight they may remove the ventilator and transport her in the morning.
Hope was brought back to Calgary on Sunday.
Monday December 19th
Early Monday morning, Hope began having some seizures. Initially mild, lasting only a few seconds, they grew in intensity with one lasting almost half an hour. Anti-seizure medication helped to bring the seizures under control, but after a few small but positive steps during the last few days, this was an unexpected setback in Hopes recovery process.
Although Hope appeared to be doing better, medical staff were concerned that seizures were continuing in spite of the anti-seizure drug, they were now simply not something that could be seen over the effects of the sedation, and they wanted to cut back on the sedative so that the seizures could be more easily monitored. Additionally, electroencephalogram (EEG) and magnetic resonance imaging (MRI) tests were ordered to determine brain activity. Details of how both tests work, and what they measure are readily available online.
Hope’s chest X-ray shows that her right lung has collapsed again, most likely due to the increased sedation which would prevent Hope from being able to continue clearing fluid from her lungs.
Hope remained on the ventilator through the day. Tests showed that the anti-seizure medication was working, and that she was no longer having any seizures, however tests also showed extensive damage to her brain, resulting from a lack of oxygen. Medical staff have informed the parents that Hope’s damage affects both sides of her brain, and they have been warned that Hope will never recover to be the same child she was before.
Tuesday December 20th
Hope spent most of Tuesday still heavily sedated. Her lungs are continuing to improve, shown especially by an attempt to clear themselves through coughing. Medical staff expects to remove the breathing tube from her on Wednesday. She continues to move her limbs more and more even against the sedatives she is on. Hope’s eyes too, are more open today than they were on Monday. There are small but positive signs.
"Yet this I call to mind
and therefore I have hope:
Because of the LORD’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The LORD is my portion;
therefore I will wait for him.”
The LORD is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the LORD."
~Lamentations 3:21-26
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